Lyme Disease: small tick leaves large footprint

Patricia A. Lind figures that between the time her daughter contracted Lyme disease 15 years ago when she was 4, until she was diagnosed three years ago, she just about heard it all.

Mrs. Lind, a former medical assistant, said when she found the tiny black-legged deer tick behind her daughter's ear, she pulled it off, put it in a bag and called the pediatrician.

"They told me to throw the tick away and not to bring my daughter in. She would be fine," she recalled. "If you hadn't been to Lyme, Conn., or to the Cape, you don't have Lyme disease. That's the way it was handled back then. It's just starting to change."

This week at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Boston, the Centers for Disease Control and Prevention announced the number of Americans diagnosed with Lyme disease each year is approximately 300,000, 10 times more common than previously thought. In 2011, the last year for which stats are available, 96 percent of Lyme disease cases were reported from 13 states, including Massachusetts, Connecticut, New Hampshire, Vermont and Maine.

Mrs. Lind said her daughter, Kathryn, did not have the telltale bull's-eye rash after she was bitten by the tick. But, a couple of weeks later, she had an unexplained extremely high temperature. That went away, but then she seemed to be sick all the time.

The dozens of doctors along the way told her different things, including that Lyme disease did not exist, it was all in her daughter's head, she had iron deficiency, it was part of the onset of puberty and that her daughter was depressed and should see a psychologist. When she was 9, Kathryn was diagnosed with severe fibromyalgia and she had become allergic to most antibiotics and pain medication.

It was a massage therapist she had gone to for help with the joint and muscle pain who told Mrs. Lind that she thought Kathryn had chronic Lyme disease. The therapist suggested that a blood sample be sent to an independent out-of-state lab, since all the tests she had done over the years had turned out negative.

"The results came back off the chart positive for Lyme disease," Mrs. Lind said. "Since then we've probably seen about 25 doctors because there are two schools of thought when it comes to the disease." She said there are the "Lyme literate" doctors who believe that Lyme is a viable disease. And there are doctors, she said, who strictly believe the only treatment for Lyme disease is 30 days of the antibiotic doxycycline.

Mrs. Lind said her daughter is at the point where she has seizures and spends most of her time lying on the couch. The disease has also affected her neurological system to where she is not able to read or comprehend what is read to her. She began seeing significant relief in February, after a naturopathic doctor put her on a six-month regiment of the Cowden's Condensed Support Program. Instead of the conventional antibiotic treatment, Cowden's uses several herbal extracts designed to kill the Lyme bacteria and the fungi that cause the disease.

Over the years, Mrs. Lind said, visits to countless doctors, prescriptions and lab tests have "crushed the family financially," costing $11,000 the first seven months of this year alone. She was excited and hopeful to hear about legislation that has been filed that would require insurance companies to cover the costs of diagnostic tests and medical treatment for Lyme disease. The bill is one of the recommendations from the special state commission studying the disease.

State Rep. Theodore C. Speliotis, D-Danvers, said he filed House Bill No. 989 because it can cost $100,000 to $150,000 or more to be treated for the disease because it is not covered by most insurances.

The bill has been referred to the Joint Committee on Financial Services. A public hearing is expected to be held sometime after Labor Day.

Mr. Speliotis said another motivation has been that although Massachusetts is one of the most technologically advanced states in the country, many people in the state are forced to go to Connecticut and other states to get treatment.

Dr. Jennifer Daly, clinical chief for infectious diseases at UMass Memorial Medical Center and an expert on Lyme disease, said she has seen "tons of patients with acute Lyme disease." She said it's really important that doctors understand that an infected person's blood tests for the disease may be negative early on. Over time, a person develops antibodies that can be found in the blood test, she said. Treatment guidelines from the Infectious Disease Society of America will be revised as new information comes along. Current guidelines call for between two weeks and two months of antibiotics, she said.

"Doctors have to listen to their patients and become familiar with acute Lyme disease so they can diagnose without relying on the test alone," she said. "I think we need to make sure there's enough continuing education for physicians."

Charles Benjamin Beard, head of the CDC's bacterial diseases branch, said the federal agency has known for years that Lyme disease cases are under-reported.

He said studies dating back to the 1990s showed a range of three to 12 times higher. The next step, he said is to try to understand the cost of the illness.

"We hope that having real numbers, or at least good estimates, will help highlight the magnitude of the problems so that additional resources from multiple sectors might be identified in support of a solution," he said.